(no subject)

[vicarz]

Let me tell you what it's like. I'm not whining, I think, but this is just downright interesting at this point.

The Doctors vary in what they conclude from the same data. Dr. Doom n' Gloom once said if my dad didn't improve in 48 hours, he probably would not and we should consider "what to do." He said that ... maybe 2 weeks ago. He's the one I talked to first, he's the one that made me think dad was about to die. Then the regular cancer doctor who has treated him for ages said he's had patients go under for months and come up fine. He talked about when he left the hospital, not if. Other doctors fell within that spectrum.

A couple days ago a young doctor said he needed a tracheotomy and that receiving such would allow him to wake up and communicate, probably recovering much faster. They also said he probably wouldn't leave the hospital until December. It was a hard decision to make - cutting into the man, but we went with it based on the cheery nearly-certain forecast. Well, first they put the wrong sized "collar" (neck tube insert) into his damn neck, so he kept gurgling and having trouble breathing. A week later, yesterday morning, they replaced the collar and assure us everything is fine. Well, it was already supposed to be fine, but the gurgling stopped.

Yesterday the only good news was that his temperature had dipped from 102 to a steady 98.6. The bad news was that he had not really had enough sedatives to remain unconscious, and the fact that he hadn't woken up and that his arms and legs are like a rag doll is "very concerning." Dr. Doom and Gloom gave his 48 hours speech again (I doubt he remembers he gave it before, but he might - I suspect he's a quality of life person over quantity) this time about possible brain trauma. Then last night we got the update - his temp was actually 101, and the good reading was in error as the temperature gauge had become dislodged. I had just called a long-time friend and my father's sister to deliver the previous "good news." I didn't call back to update.

So, that's a slice of the last month of my life with my dad. It's been a month as of today. It could be described as routine, as I haven't missed a day at the hospital (though I've varied both the time of day and how long I stay). Hope one day, dashed the next, and always from an unexpected direction. One day a clot, next day it's nothing, another day huge humping cancer, the next it's nothing to sweat over, one day he'll wake up soon and write us notes to tell us what he wants, next day rag doll, and the temperature change changing is my new favorite, despite the lack of overall import.

My consideration now is this: my dad has always balanced quality of life with his every decision about treating cancer. He wasn't supposed to live this long, but at each step of treatment he made a choice that what he suffered through wasn't so bad that it made life not worth living. The problem I'm facing now is wondering how long he would live IF he survives this, and if he would WANT to go through this much for that. Is 2-4 months in a hospital worth 2-4 years of life with cancer when you get out? I don't know what he feels in there, still. I suppose if he wakes up and doesn't remember a thing, thinking he just nodded off an hour ago, it's all worthwhile. If he's in a living hell, well that's a little different. I've thought of being his Indian, but the more likely scenario is that I'll try to convince his wife of what his likely wishes are. He always made it clear he doesn't want to be a Schaivo, and as of yesterday we're finding we might have, at the advice of various doctors, made him just that.

I considered chronos last night, also dinner with a friend, also bad movies with friends, also drinks with friends. I kept not making up my mind, but after the temperature news I went straight for the stoli and dug up "Lords of the Realm 2" a virtual land created in the 1990s to represent the 1800s and pillaged the sheep.

Comments

[telie13.livejournal.com]

*nudge*

thinking of you, FWIW (which is probably nothing but its meant sincerely)
S

[vicar.livejournal.com]

I know you mean it, but not really what I'm looking for. This is more a post about the flow of information and ambiguity - sorry if it was written poorly.

What do you think of the radio station?

You might appreciate this - adding another quality to "the datability list." Someone who cares for a sick pet, or keeps the pet no one else wants - serious long-term relationship factor. Someone who gets a cute puppy, then neglects it, then moves and "has to put it down" is not dating material at all. Pets as screening devices. Guess which category fashion dogs fall in?

[telie13.livejournal.com]

I think you are right about the dateability thing, definitely.

Most docs aren't really well trained in end of life care - something the medical school system is trying to correct now. So, if they are off kilter, dont communicate, or aren't in synch, keep that in mind. They have about as much training in this as you do.

In my experience...

[http://users.livejournal.com/_blackjack_/]

...cancer doctors have the worst God complexes of any doctors short of neurosurgeons. They assume they can cure everything, and pay no attention to anything that ISN'T the cancer they are magically curing.

Obviously Dr. Gloom isn't right either, but it's good to bear in mind that different specialties have different delusions, and the only people who are likely to look at your dad as a person rather than as a set of challenges are the nurses.

Re: In my experience...

[vicar.livejournal.com]

Actually the doctors seem more generally personable than the nurses, who seem akin to waitresses at Dennys - some are great and care a great deal, making your tiny slice of discomfort less painful. Others are not hiding their hostility at their situation or you coming in to interfere with their stasis.

yep

[kitteblue.livejournal.com]

This will not really be helpful, just letting you know the possibilities:

When my fathers' mother died (cancer), she had been through 6 major surgeries, radiation and chemo, and uncounted hospital stays. She went from 120 lbs up to 240lbs and died at 85lbs. She was home between the hospital stays at least 3 times a year. We also had a Dr. Doom & Gloom, we made the trip to Minnesota over and over at the last minute believing the "48 hours to go" speech. This entire process took 5 years. (I wonder what people without the income or no insurance do in this situaton do, do you bankrupt your children with hospital bills?)

Was it the right thing? I have no idea. But I know how guilty my parents would have felt if they didn't do all they could, And her husband needed time to let her go. Do what you need to and have all the family memebers take breaks and get awy from it for awhile. Getting some down time is really important to the ability to think clearly.

Re: yep

[vicar.livejournal.com]

Thanks - good notes. Death is certain, but we've always known that and addressed it as well as you can. He did a lot of therapy, but never or rarely hospital stays. The guilt is more from trying to figure out, guess, what he wants.

We're also the only ones in the area. Remember when Homer is in the RV lot, and the salesman says "Really, it's either this or a wagon." Well, I'm that RV.

Re: yep

[kitteblue.livejournal.com]

While the tech is SOOOO much better than even ten years ago, it's still like fixing a car. We think it's the lungs, we fixed the lungs but there's still a problem. Let's try the manifold.

I believed you mentioned this at the onset- LIVING WILL. Contrary to how we felt in the 90s, we're not living forever and there's a lot of gray area in there.

Re: yep

[vicar.livejournal.com]

I love the car analogy - have made it a few times myself. It gets better - suppose you find the cause of the problem, but by the time you do it's knocked 3 other things loose, or fixing this thing just revealed the other 5 things wrong...

The living will sounds so simple, and he has one, but then the question is "What is this, what does it mean, what are the odds of x, y, or z, and what would he want - we never talked about THIS situation..."

Re: yep

[kitteblue.livejournal.com]

If he has a living will you're ahead of most families in this situation. Small favors, I know, but it's something.
Now get out and enjoy a little of the weather this weekend.

Re: yep

[ashbet]

*nods* My Dad had a living will, but he never contemplated having brain cancer that attacked his language ability, leaving him conscious and semi-mobile (right-side paralyzed) but unable to speak, write, or communicate, for months on end.

It would have been so much easier if there were a clear-cut situation, but there so often isn't one. *sigh*

I do know where you're coming from as to the ambiguity and the fear of making medical decisions that could result in brain death/coma/etc. It's a hellish place to be.

-- A :/

Re: yep

[vicar.livejournal.com]

Oh dear god, yeah that is a rough ride. I really jsut wish for some lucid moments with which to give some direction. On the other hand, good or bad news would give us direction, or confidence in a direction, as well.

[pictsy.livejournal.com]

It sounds like these doctors are each basing their expectations on their own experiences rather than the full spectrum of medical experience, or actual research.

[vicar.livejournal.com]

I think to correct this problem in some small way I should go to get my MD. By the time I've finished my residency, I will probably need all sorts of medical care - but I'll be licensed to self-treat! Then when I screw up, I'll also be an attorney so I can sue myself for malpractice. I'll write about the whole thing in my LJ...

I suppose the profession is weird - they actually have case studies every day, vs. the existing literature. I can't imagine the stress they're under, with people coming to them with their very lives at stake. I make mistakes at work all the time, actual mistakes. If a doctor makes a mistake? Then there is all this mess - not knowing exactly what is going on or why, and trying to fix it to everyone's satisfaction. I may bake them cookies (and give most to the nurses).

[kabistani.livejournal.com]

I'll be sitting around the house all day Saturday, watching college football with Joey and Patrick. Stop by if you feel like a beer and company. The whole day should be raucus, but LSU Starts at 8:00, which will be the most noise, if you want quiet, give me a holler and we'll set up something else later.

[vicar.livejournal.com]

Thanks - I'll be fine. I curl up with a soft warm fuzzy LJ every night. I like my wire monkey mommy.

[cweaselle.livejournal.com]

I'm so sorry about your father. I will tell you that even when there is really bad problems at the beginning sometimes they do get better. I'm not telling you what to do with your father, but I am telling you what came about for me. If I had stayed where I couldn't eat food or things like that I would have rather not lived, but it did get better for me.

I like your view that your dad had a good life even with all his problems. That's probably how he would want you to think.

Your dad's bad doctors making up stories about what is wrong with him sounds a little familiar to me. Maybe he can't get cancer because he's not the right age. I know that I shouldn't make jokes about how I was taken care of when your father is in such danger. I hope for the best both for you and him.